NIH Archives - Ñî¹óåú´«Ã½Ò•îl Health News /tag/nih/ Ñî¹óåú´«Ã½Ò•îl Health News produces in-depth journalism on health issues and is a core operating program of KFF. Tue, 14 Jul 2026 20:38:42 +0000 en-US hourly 1 https://wordpress.org/?v=6.8.6 /wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=32 NIH Archives - Ñî¹óåú´«Ã½Ò•îl Health News /tag/nih/ 32 32 161476233 Readers Sound Off on Wage Garnishment, Work Requirements, and More /letter-to-the-editor/letters-to-editor-readers-nih-staff-cuts-work-requirements-march-2026/ Wed, 01 Apr 2026 09:00:00 +0000 Letters to the Editor is a periodic feature. We welcome all comments and will publish a selection. We edit for length and clarity and require full names.


Who Really Collects in the Wage Garnishment Game?

I was a consumer bankruptcy attorney for years during the global financial crisis of 2008 (pre-Affordable Care Act). Around 40% of the bankruptcies were caused by medical debts uncovered by insurance. With the effectiveness of the ACA, the number of bankruptcies in Colorado plummeted.

My comment on “State Lawmakers Seek Restraints on Wage Garnishment for Medical Debt” (Feb. 20)? BC Services acts as if it is garnishing these wages to keep rural hospitals, medical providers, etc. in business. The likely reality is that BC Services (and other collection operations) takes “90-day-overdue” bills — which may or may not have ever been delivered to the patient; usually disregards whether the hospital has offered the patient a reasonable repayment schedule; and then keeps 50% or more of the debt, along with its attorneys’ fees and costs. The medical provider receives very little of the money sent to collections.

— Bill Myers, Denver


On Work Requirements: Working Out Solutions

Eighty hours a month works out to about 20 hours a week, and I think if people can work or study from home, they should be able to meet the requirements (“New Medicaid Work Rules Likely To Hit Middle-Aged Adults Hard,” Feb. 11). More importantly, though, “navigators” will help people get exemptions if they qualify. I wonder why there is so much moaning about the law and nothing about the means to fix the problems it creates. It seems like a lot of hot air. We know it’s a problem. So how about exploring solutions?

— Therese Shellabarger, North Hollywood, California


The Flip Side of a Drug’s Benefits

I read Phillip Reese’s report on anti-anxiety medications, adults who take them, and their concerns about this administration’s policies regarding them (“As More Americans Embrace Anxiety Treatment, MAHA Derides Medications,” Feb. 23). If the anti-anxiety medications provide solace to adults such as Sadia Zapp — a 40-year-old woman who survived cancer — then she should be able to continue them. Unfortunately, the same is not true for many other people, particularly patients such as myself.

When I was 16, I went through an unnecessarily painful and traumatic year. I was sent away from home three times, sent to a wilderness therapy “troubled teen industry” camp that has now been shut down, sent to a new boarding school that I hated, and was away from my family for many months. Of course, I felt depressed and anxious, so my psychiatrist at Kaiser prescribed citalopram. At first, it caused extreme agitation and violent ideation, stuff that is commonly reported to the point it has an . Thankfully, it calmed down. And when I lowered the dose, my life was calm, stable, and productive.

Unfortunately, that did not last long. Over time, the effects wore out, so I tried to go off. I was not given any safety instructions on how to taper slowly and safely, so I went off multiple times. Each time caused extreme withdrawal symptoms, including self-harm, crying spells, and worse depression than ever before. Also, the sexual “side effects” persisted and even worsened upon cessation to this day. It is a , and it is very rarely covered. While the worst symptoms of withdrawal went away, I still live with a worsened sexuality than a young adult my age is supposed to have.

Back to the article, which seems to focus on adults. Its only named profile is Zapp, and when it cites statistics, it begins at age 18. Solely showing statistics of adults is unethical because it obscures the high and rising prescription rates among minors. Minors are also more likely to suffer permanent developmental damage to their sexualities and experience suicidal ideation. This is a major problem that warrants further conversations.

When covering the downsides of SSRIs, the article mentioned only mild side effects, like upset stomach, decreased libido, and mild discontinuation effects, without covering the major concerns of suicidal ideation, akathisia, PSSD, and severe withdrawal. I believe that framing antidepressants as an unequivocal good is equivalent to framing them as an unequivocal evil; both misguide patients through harm and deception.

Lastly, I want to finish on this by the brilliant psychiatrist Awais Aftab.

— Eli Malakoff, San Francisco


A Rigged System?

Insurers pay these exorbitant amounts because they set them in the first place (Bill of the Month: “Even Patients Are Shocked by the Prices Their Insurers Will Pay — And It Costs All of Us,” March 3). They have been doing this for years. I learned this over 15 years ago, when I dislocated and broke my elbow. I had no insurance and, as a “self-pay” patient, paid the surgeon, hospital, and radiology center myself. They set the prices high enough that people will buy insurance out of fear, ensuring they make a profit.

The first thing I learned was that there is not a set price for all; for the insured, it is a fixed system controlled by contracts and codes. As a self-pay patient, the cost may vary.

It was late in the evening and I tripped over a snow shovel, slammed my arm up against a gate post, and it was hanging like a puppet without a string! I called an ambulance and, at the hospital, they strapped me up and told me that I must see the orthopedic surgeon the next day. He sent me to a radiology facility for an X-ray; I paid for it and took it to the surgeon. When I received a bill from the radiology center, I called to say that I had paid. They said it was for the radiologist (who, as far as I knew, never analyzed it). The contract with the insurance company required that every patient had to be billed, whether or not a radiologist reviewed scans. If not, they would lose their contract.

My elbow was dislocated, with a fracture, and I needed surgery. The surgeon’s office called the hospital for pricing, and he told me it would be about $2,000 for outpatient surgery. I called the hospital to confirm the appointment for outpatient surgery, and they wanted $8,000! When I objected, and told them what the surgeon had quoted, they checked. “Oh, you are a self-pay!” Cost would be $2,000. I gave them my card number and prepaid it before they could change their minds.

I had a friend in New Jersey who had the very same injury and surgery. She had insurance through her employer, and she paid more in copays than I paid when paying directly.

Insurance companies are SHARKS!

— Stephanie Hunt-Crowley, Chamberet, Nouvelle Aquitaine, France (formerly Frederick, Maryland)


US vs. Canada

Re: the article about nurses moving to Canada (“‘You Aren’t Trapped’: Hundreds of US Nurses Choose Canada Over Trump’s America,” Feb. 26). You neglect the “rest of the story” — or maybe you don’t know it? I had my medical office in Los Angeles for about 30 years and had dozens of Canadians come to L.A., where some had to self-pay for care, but chose to because of the superior level of medicine available. One man, a son of a gynecologist in Canada, had a draining abscess from a years-old appendectomy. The reason was, after investigation, that the Canadian practice had used silk suture (organic material), which can harbor microbes and carry a greater risk of infection. The trend has been to discontinue silk in favor of nylon. The Canadians were obliged to “use up” the silk suture they had before switching to nylon. The surgeons at my hospital were astounded.

— Kathryn Sobieski, Jackson, Wyoming


On the NET Recovery Device’s Track Record — And Detractors

I read your piece about the NET Recovery device with interest (Payback: Tracking Opioid Cash: “Maker of Device To Treat Addiction Withdrawal Seeks Counties’ Opioid Settlement Cash,” March 18), and I am grateful to you for pointing to one of our many success stories — the story of Michelle Warfield, whom the NET device helped get off opioids.

I also wanted to note a couple of instances where I see the facts differently than they were portrayed in your piece. Your piece seemed to imply that the NET device is new, and I wanted to note that the device has been around for decades (it helped Eric Clapton and members of The Who and the Rolling Stones get sober back in their heyday), and is based on a proven technology that stimulates both the brain and the vagus nerve to help patients with their cravings and withdrawal. There are countless studies that prove the power of neurostimulation, including that showed significant reductions in opioid and stimulant use without medication for a polysubstance population receiving at least 24 hours of stimulation.

I also noted you quoted detractors of our device, and I’d simply urge anyone looking at the issue of opioid addiction abatement to consider who those detractors are; organizations that now find themselves competing for grant dollars from counties increasingly choosing to fund innovation. It is not surprising that those with the most to lose financially would prefer the status quo. But the counties and jails leading this charge are doing so because they have seen what works, and their constituents, real patients, are the proof.

The success stories of our patients speak for themselves, and our only motivation at NET Recovery is to help as many people as possible get truly clean and sober by helping to break that initial grip the opioids have on them. When the NET device works, and it works an astounding 98% of the time (producing a clinically meaningful reduction in opioid withdrawal symptom severity in one hour), our patients are experiencing the return of choice and true freedom.

Thank you for your interest in our work and for the coverage you provide.

— Joe Winston, NET Recovery CEO, Costa Mesa, California


Education Is the First Step in Lowering Health Care Prices

After reading this article about making hospital prices more transparent, I realized the information alone could help drive medical prices down (“Trump Required Hospitals To Post Their Prices for Patients. Mostly It’s the Industry Using the Data,” Feb. 17). Your publication shows good use of evidence-based research — it’s timeless and informative.

As a student at Thomas Jefferson University on the path to serving in the health care arena, I understand the struggles and complexities of medical decision-making. In the medical setting, the topic of price is always overshadowed by patient care and clear communication on the part of both professionals and patients, and it does not reflect how patients would navigate comparison-shopping for care. Almost every patient relies on the help of a physician or gets help from an insurance network and not from online price matching.

I believe that many people should engage with this article even if they aren’t entering the health profession; it would benefit everyone. Although price transparency may help insurers and care providers more than patients, if their goal is to lower prices, they must look beyond the simple posting or sharing of prices. I appreciate the effort to try to bring awareness to this major issue and encourage thoughtful policy discussion about lowering medical prices.

— Jan Rodriguez, Philadelphia

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

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Six Federal Scientists Run Out by Trump Talk About the Work Left Undone /health-industry/nih-national-institutes-of-health-scientist-exodus-disease-treatments/ Fri, 06 Mar 2026 10:00:00 +0000 /?post_type=article&p=2162343 Marc Ernstoff, a physician who has pioneered immunotherapy research and treatments for cancer patients, said his work as a federal scientist proved untenable under the Trump administration.

Philip Stewart, a Rocky Mountain Laboratories researcher focused on tick-borne diseases, said he retired two years earlier than planned because of hurdles that made it too challenging to do his job well.

Alexa Romberg, an addiction prevention scientist focused on tobacco, said she “lost a great deal” of the research she oversaw when federal grants vanished.

“If one is thinking about the ‘Make America Healthy Again’ agenda and the prevention of chronic disease,” Romberg said, “tobacco use is the No. 1 contributor to early morbidity and mortality that we can prevent.”

The National Institutes of Health is the largest public funder of biomedical research in the world, with a to “enhance health, lengthen life, and reduce illness.”

Over decades, the value of the NIH may be the one thing everyone in Washington has agreed on. Lawmakers have routinely boosted its funding.

“I’m so pleased to be associated with NIH,” former Sen. Roy Blunt, a Missouri Republican and one of the NIH’s biggest champions in Congress, shortly before he retired.

But in President Donald Trump’s second term, the NIH has seen an exodus of scientists like Ernstoff, Stewart, and Romberg. Federal data shows the NIH lost about 4,400 people — more than 20% of its workforce. Scientists say the departures harm the U.S.’ ability to respond to disease outbreaks, develop treatments for chronic illnesses, and confront the nation’s most pressing public health problems.

“People are going to get hurt,” said Sylvia Chou, a scientist who worked at the National Cancer Institute in Rockville, Maryland, for over 15 years before she left in January. “There’s going to be a lot more health challenges and even deaths, because we need science in order to help people get healthy.”

Why They’re Leaving

Ñî¹óåú´«Ã½Ò•îl Health News interviewed a half dozen scientists who said they quit their jobs years before they’d planned to because of the tumult of 2025.

Only a few years ago, the NIH workforce was steadily growing, from roughly 17,700 employees in fiscal year 2019 to around 21,100 in fiscal 2024, federal data shows. Under Trump, those gains have been slashed.

The Trump administration enacted a campaign to purge government workers perceived as disloyal to the president. People were fired or encouraged to leave. Officials instituted a months-long freeze on hiring.

The NIH workforce has plummeted to about 17,100 people — its lowest level in at least two decades. Most who left weren’t fired. Roughly 4 in 5 either retired, quit, had appointments that expired, or transferred to a different job, according to federal data.

An older man in a shirt, vest and glasses leans on a rail
Physician Marc Ernstoff joined the National Cancer Institute in 2020 to shepherd research on how the immune system responds to cancer, to advance the development of drugs that help patients live longer. Ernstoff said he left his job in October because, under President Donald Trump, the National Institutes of Health had turned into a “hostile work environment” and he was denied permission to work remotely. “I was not ready at all to retire,” Ernstoff says. (Rob Strong for Ñî¹óåú´«Ã½Ò•îl Health News)

Scientists watched with dread as their colleagues were forced to terminate research funds for topics the Trump administration deemed off-limits. Across NIH labs, routine work stalled. They said they faced major delays in accessing equipment and supplies. Travel authorizations were slowed or denied.

Agency staff were instructed not to communicate with anyone outside the agency. When they could talk again, they were subject to greater constraints on what they could present to the public.

And under the administration’s agenda to eliminate “diversity, equity, and inclusion,” references to minorities or health equity were purged from NIH-funded research. Initiatives to protect Americans’ health were gutted. Among them: support for early-career scientists, ways to prevent harm from HIV or substance use, and efforts to study how different populations’ immune systems respond to disease.

, Chou and Romberg were among a group of NIH scientists who said they resigned in protest of an administration “that treats science not as a process for building knowledge, but as a means to advance its political agenda.”

Alexa Romberg sits at a table on a screened-in deck outside.
Alexa Romberg says she thought she would spend the rest of her career at the NIH before the Trump administration made it untenable. “It took a long time to really decide to give up on that, and that that wouldn’t be the future for me,” she says. (Eric Harkleroad/Ñî¹óåú´«Ã½Ò•îl Health News)

A ‘Fundamental Destruction’

Health and Human Services spokesperson Emily Hilliard said in a statement that the agency had shifted to focus on evidence-based research over “ideological agendas.” She said the NIH is still recruiting “the best and brightest” and advancing high-quality science to “deliver breakthroughs for the American people.” The federal health department oversees NIH.

“A major reset was overdue. HHS has taken action to streamline operations, reduce redundancies, and return to pre-pandemic employment levels,” Hilliard said.

Many scientists, however, question whether the NIH can still fulfill its public mission.

“There’s been a fundamental destruction,” said Daniel Dulebohn, a researcher who spent nearly two decades at Rocky Mountain Laboratories in Hamilton, Montana. It’s going to “take a very, very long time to rebuild.”

Dulebohn left the NIH’s infectious disease and allergy institute in September.

He analyzed how molecules and proteins interact in diseases, such as Lyme disease, HIV, and Alzheimer’s — information that’s key for new treatments. Dulebohn was a resource for scientists when they hit walls trying to understand, for example, if molecules could prevent infection or react to a treatment.

Now he and his wife are living off savings in Mexico with their three young kids. Dulebohn’s thinking about what’s next. One option: real estate.

The expert in biochemical analysis operated equipment few others know how to use. His exit further depletes resources in the specialty.

“It’s clear when someone comes out with a drug and now you’ve just cured a disease. But you never know which ones could have been cured,” Dulebohn said. “We don’t know what we’ve lost.”

Laura Stark, a Vanderbilt University associate professor who specializes in the history of medicine and science, said wiping out NIH staff will propel a shift toward private-industry research, with its profit motives, “as opposed to actually helping American health.”

“We just don’t have people who are now able to pursue research for the public good,” Stark said.

From Support to Scrutiny

Stark said the seeds of the present-day NIH were planted during World War II when the U.S. government spearheaded an effort to mass-produce the antibiotic penicillin to save soldiers from infections.

The agency has played a central role in lifesaving discoveries and treatments — including for heart disease, cancer, diabetes, and genetic diseases such as cystic fibrosis.

With bipartisan backing from Congress, the NIH budget has grown significantly over time, sitting at $48.7 billion for fiscal 2026. The NIH allocates roughly 11% of its budget for agency scientists. About 80% is awarded to universities and other institutions.

The money may be there, but the people who get it out the door are not, scientists said.

Jennifer Troyer left the National Human Genome Research Institute in Bethesda, Maryland, on Dec. 31, after working in various positions at the NIH for about 25 years. The division she led reviews research and oversees grants to organizations studying the human genome — or a person’s complete set of genes — and how it can be used to benefit health.

Last year, she said, her division lost about two-thirds of its staff. “There really are not enough people there right now to actually get the work done,” Troyer said. “It’s extreme harm.”

She decided to quit the day Trump issued an in August that prohibited the use of grants to “fund, promote, encourage, subsidize, or facilitate” what it described as “anti-American values.” It also allowed political appointees to review all funding decisions.

“I wasn’t going to operate a division under those orders,” Troyer said. She hasn’t figured out her next career steps.

Jennifer Troyer stands in her office. It is decorated with objects related to Africa, the continent with the most genetic diversity.
Jennifer Troyer left her job at the National Human Genome Research Institute in December, after working at the NIH as a contractor or civil servant for more than two decades. (Eric Harkleroad/Ñî¹óåú´«Ã½Ò•îl Health News)

‘Enough Is Enough’

Research aligned with the administration’s stated priorities has suffered.

HHS Secretary Robert F. Kennedy Jr. has called the diagnosis and treatment of Lyme disease — a tick-borne infection that can cause debilitating lifelong symptoms — . In December, Kennedy said the government had long dismissed patients burdened with a disease that in the U.S. are diagnosed with annually.

That same month, Stewart, who had dedicated his career to ticks and Lyme disease as a federal scientist, retired early. He’d worked for the government for 27 years. Stewart said workforce cuts and travel delays stalled his efforts to confirm how far Lyme-carrying ticks had spread — information that could help doctors recognize symptoms sooner.

Philip Stewart says the Trump administration had created too many hurdles over the past year for him to do his job well. (Katheryn Houghton/Ñî¹óåú´«Ã½Ò•îl Health News)

Stewart was a lead scientist on research published last year , or deer tick, in Montana. It was the first time the tick best known for transmitting Lyme disease had been confirmed in the state. He wanted to determine if the discovery was a fluke or an indicator that the species was gaining ground.

“The advice we’ve been getting is, ‘Put your head down below the trench line. Don’t look. Don’t peek over and risk getting shot,’” Stewart said. “At what point do you finally say, ‘Enough is enough’ and ‘We’re not being effective anymore’?”

Scientists said those early in their careers are looking abroad for jobs and training. People who want to stay in the U.S. are running into problems getting hired because of cuts to research grants and uncertainty about funding.

Collectively, people studying diseases warn the U.S. could lose its long-held position as the global leader in biomedical research, with devastating impact.

Stanley Perlman, a University of Iowa virologist who studies pediatric infectious diseases, said that title earned the nation more than prestige; it drew top scientists from the world over to the U.S. to study diseases that particularly affect people here.

There’s no guarantee halted research will be picked up elsewhere, whether by private industry or other countries. If others are doing that work, Americans could face delays in seeing benefits, he said.

“If you don’t have access to how the work was done,” Perlman said, “it’s harder to reproduce and adapt it for your country.”

Ñî¹óåú´«Ã½Ò•îl Health News data editor Holly K. Hacker contributed to this report.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

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The People — And Research — Lost in the NIH Exodus /health-industry/nih-national-institutes-of-health-resignation-scientist-profiles-brain-drain/ Fri, 06 Mar 2026 10:00:00 +0000 /?post_type=article&p=2162351 ‘No Longer Based on Facts or Truth’

Sylvia Chou, 51, Maryland

Program director, National Cancer Institute

Sylvia Choi stands by a fence in her backyard. Shrubbery and a building are seen behind her.
(Eric Harkleroad/Ñî¹óåú´«Ã½Ò•îl Health News)

Sylvia Chou specializes in communication between patients and their health care providers, and social media’s role in public health. She joined the federal government in 2007 as a fellow and became a civil servant in 2010.

She left her National Cancer Institute job in January, she said, because the “work is no longer based on facts or truth.”

After President Donald Trump returned to office, Chou said, health communication scientists like her were falsely accused of “essentially doing propaganda work.” The administration’s “anti-DEI hysteria,” she said, referring to diversity, equity, and inclusion, meant research funded by the National Institutes of Health was flagged and scrubbed of references to “equity, vulnerable, underserved, poor, even communities of color, minorities.”

She said the agency’s climate in 2025 brought to mind her childhood in Taiwan, when the island was still ruled by an authoritarian regime.

“I could see the difference between a time when, you know, we have a choral competition and we have to sing the same songs to revere the leader of the country, to suddenly they say you can sing any song you want,” Chou said. “I came to this country in part because there was so much opportunity to think freely.”

“To see us going backwards,” she added, “it just made me feel like I have limited time on this earth and I cannot participate anymore inside the system.”


‘One Hurdle After Another’

Philip Stewart, 60, Montana

Staff scientist, National Institute of Allergy and Infectious Diseases

Philip Stewart stands outside in a wooded area. Evergreen trees are seen behind him.
(Katheryn Houghton/Ñî¹óåú´«Ã½Ò•îl Health News)

Philip Stewart’s work was about understanding the pathogens ticks carry that make people and animals sick.

That often started with walks through tall grass searching for the arachnids. He analyzed them back at Rocky Mountain Laboratories.

When Trump entered office in 2025, Stewart experienced repeated disruptions to his work.

“It’s been one hurdle after another. Just when you’ve gotten over one and you think it’s finally behind you, another hurdle pops up,” Stewart said. “I don’t see that changing.”

NIH workers responsible for buying laboratory supplies were fired. As a result, Stewart said, he faced delays in getting the basics, including materials used to identify tick species.

Travel bans in early 2025 threatened his fieldwork. When those bans lifted, Stewart said, for the first time in his career he needed a presidential appointee’s approval to travel. Amid last year’s government shutdown, Stewart missed his only opportunity in the year to collect ticks from deer at hunting stations — his best chance to see if deer ticks had become established in Montana.

The review process for scientists to share their research became more burdensome.

He said scientists have debated whether they should try to stay and work within the system, adding that, if everyone leaves, “no cures get found.”

“If I saw a way to stay on and be useful and perhaps to protest, then I think I would’ve stayed,” Stewart said. “But I don’t see any of those alternatives.”


‘Losing a Lot of Expertise’

Alexa Romberg, 48, Maryland

Deputy branch chief, National Institute on Drug Abuse

Alexa Romberg stands in a screened-in porch area in her home. She wears a shirt with her oath of office written on it.
(Eric Harkleroad/Ñî¹óåú´«Ã½Ò•îl Health News)

Alexa Romberg is a scientist who specializes in preventing the use of and addiction to tobacco, electronic cigarettes, and cannabis. The harms that stem from substance use or addiction don’t affect all Americans equally, she said.

Romberg left her “dream job” at the National Institute on Drug Abuse in December, she said, because Trump policies had compromised the research she helped oversee. Among other things, Romberg said, grants were terminated under an initiative she led to reduce health disparities among racial and ethnic minorities related to substance use. Pending applications were also pulled, she said, adding, “I couldn’t be effective from the inside in actively really preserving the science.”

Romberg said her work was undone even though it was consistent with “what the NIH leadership is saying that they want.” In August, NIH Director Jay Bhattacharya on priorities that included “solution-oriented approaches in health disparities research.”

Before the upheaval throughout 2025, she thought she would work at NIDA for the rest of her career.

“We’re losing a lot of expertise,” Romberg said. “Both scientific,” she added, and “institutional knowledge.”


Research ‘for the Benefit of Our Society’

Marc Ernstoff, 73, Maryland and Vermont

Branch chief, National Cancer Institute

Marc Ernstoff sits at a desk in an office with a computer.
(Rob Strong for Ñî¹óåú´«Ã½Ò•îl Health News)

Marc Ernstoff spent most of his career in academia before joining the National Cancer Institute in 2020. He led a team of scientists who oversaw grants for research into how the immune system responds to cancer, with the goal of developing drugs that extend patients’ lives.

“I felt that it was important for me to help define a national agenda in immuno-oncology and to give back to a country that I love by working as a civil servant,” Ernstoff said.

Under Trump, the NIH became a “hostile work environment.” Projects with “no weaknesses” were denied funding. Ernstoff left because of those challenges and because he was denied permission to work remotely. He now has a part-time position at Dartmouth Health in New Hampshire.

Leveraging a person’s immune system to fight off cancer is “just the beginning of the story,” Ernstoff said. Understanding how the immune system works — and the environmental and other factors that affect it — all “goes into developing better therapeutics for patients.”

“In my opinion, the government has a responsibility to support this kind of research for the benefit of our society,” he said.


Eyeing Less Stress, Better Pay

Daniel Dulebohn, 45, Montana

Staff scientist, National Institute of Allergy and Infectious Diseases

Daniel Dulebohn stands outside in front of a building painted orange.
(Angela Saporita)

At Rocky Mountain Laboratories, Daniel Dulebohn studied how molecules come together in infections and diseases. He helped agency researchers across the nation get insight needed for new discoveries and treatments.

Dulebohn said he worked for the government because he knew his research wouldn’t be steered by the pressure to make money. He had planned to stay indefinitely.

“You’re trying to cure a disease or understand something fundamental about biology,” Dulebohn said.

But then his work began to feel insecure, especially as as inept, corrupt, and partisan.

“Reading the news and hearing people discuss the validity of vaccines,” he said, made him think, “Do we need iron lungs again, or people in wheelchairs, to say, ‘Huh, maybe vaccines are a good idea’? I mean, I don’t know; for me, it was just too much.”

He added federal researchers typically have other options for jobs with bigger paychecks.

Dulebohn left his job in September. He’s taking a year off to think about next options with his wife and their three young kids. Dulebohn said he’s considering going into real estate full-time, which until recently was a weekend hobby.

“It’s a lot less stress,” he said. “Pay is better.”


‘Susceptible to Political Decision-Making’

Jennifer Troyer, 57, Maryland

Division director, National Human Genome Research Institute

Jennifer Troyer sits in her home by a piano.
(Eric Harkleroad/Ñî¹óåú´«Ã½Ò•îl Health News)

Jennifer Troyer’s work for the NIH most recently involved reviewing research and overseeing funding awarded to institutions for genomics research. Genomics studies all of a person’s genes to better understand health and disease risk.

She called it quits at the end of December, more than two decades after she arrived. She left for one reason, she said: “The way that the NIH is making the agreement to fund science is now susceptible to political decision-making in a way that it was not before.”

“NIH is looking at not the value of the science but whether the science falls within particular political or socially-acceptable-to-this-administration constructs,” she said. “Not whether it’s valuable for human health but whether it might offend somebody.”

For example, she saw HHS move to to Harvard after alleging that it had shown “deliberate indifference” to antisemitism on campus. Early-career investigators from minority backgrounds lost their research dollars because the money was awarded under programs to make the science workforce more diverse.

The loss of staff means the NIH has “lost so much of that institutional knowledge and leadership, which is not something that is easy or can be learned overnight,” she said.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

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Readers Lean On Congress To Solve Crises in Research and Rehab /letter-to-the-editor/reader-letters-congress-action-research-long-term-care-hospitals-march-2026/ Tue, 03 Mar 2026 10:00:00 +0000 /?p=2161001&post_type=article&preview_id=2161001 Letters to the Editor is a periodic feature. We welcome all comments and will publish a selection. We edit for length and clarity and require full names.


We Have Invested Too Much To Let Research Programs Die Quietly

I have dedicated my life to research, but now that work, along with the trust, data, and progress behind it, is at risk (“NIH Grant Disruptions Slow Down Breast Cancer Research,” Feb. 3).

As a rheumatologist and researcher, I have spent decades studying lupus — a chronic autoimmune disease that can affect nearly every organ system, producing symptoms that are often unpredictable and difficult to manage. Its impact on a patient’s quality of life is profound: Nearly 90% of people with lupus report being unable to maintain full-time work, while many also face interruptions in education or career progression.

But funding uncertainty from the National Institutes of Health, the Centers for Disease Control and Prevention, and other federal programs means that the thousands of patients involved in my research, along with millions of patients nationwide, are at risk. While I appreciate the increase in lupus research funding included in the recently passed congressional funding package, funding disruptions persist nationwide, and recovery takes time.

Increased funding is not like a light switch that we can just turn back on. It will take a lot of time to recruit back those we lost. That doesn’t include the young investigators who would have entered the field and are now lost. It takes time to build back the broken trust and infrastructure needed to keep participants engaged and ensure reliable data.

Medical research connects the bedside to the database to the policymaker’s desk. Without it, we are blind to the very problems we most urgently need to solve. The window to save these programs is closing. We must act now before it’s too late.

— S. Sam Lim, Atlanta


Knocking Down Barriers to Long-Term Hospital Care

For many Americans, being released from their initial hospital stay is just the beginning of their care journey. Depending on the complexity of one’s condition and the clinical need for more specialized post-acute services such as ventilation, long-term care hospitals, or LTCHs, offer highly personalized care to individuals recovering from a catastrophic illness or injury (Broken Rehab: “They Need a Ventilator To Stay Alive. Getting One Can Be a Nightmare,” Dec. 2).

LTCHs play a critical role in the nation’s health care system by providing complex, resource-intensive care to patients leaving acute-care hospitals but who still need sustained support and treatment. Not only do LTCHs help patients who are dependent on ventilation, have complex wounds, or have multiple organ failure, they also serve as a relief valve in our nation’s hospital system by helping free up beds and resources at general hospitals.

However, the ability to access this vital form of care is becoming increasingly difficult — underscoring the need for lawmakers in Washington to act. Since 2016, over 100 LTCHs have closed due to chronic underpayments amid higher costs. This has been exacerbated by Congress’ decision to implement changes to how it reimburses LTCHs for its beneficiaries. As a result, patients have fewer options, and the facilities that remain open are often far away from home for patients and families, particularly in rural areas. Furthermore, insurance company barriers — such as prior authorization requirements put in place by Medicare Advantage plans — are creating harmful delays and denials of necessary and time-sensitive patient care. Consequently, many patients are denied access to an LTCH setting — or transferred to other post-acute care settings like rehabilitation or skilled nursing facilities that aren’t equipped to care for patients with highly complex needs like ventilation.

America’s sickest patients deserve the right level of care at the right time. As this need becomes more urgent by the day, policymakers must work to address these challenges and strengthen access to LTCHs, which help patients get transferred out of the hospital quicker, reduce hospital overcrowding, and ultimately save lives.

— Jim Prister, Chicago; president and CEO of RML Specialty Hospital; chair of the American Hospital Association’s Post-Acute Care Steering Committee


Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

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US Cancer Institute Studying Ivermectin’s ‘Ability To Kill Cancer Cells’ /health-industry/ivermectin-cancer-treatment-nih-study-dewormer-offlabel-drug/ Tue, 10 Feb 2026 10:00:00 +0000 /?post_type=article&p=2152756 The National Cancer Institute, the federal research agency charged with leading the war against the nation’s second-largest killer, is studying ivermectin as a potential cancer treatment, according to its top official.

“There are enough reports of it, enough interest in it, that we actually did — ivermectin, in particular — did engage in sort of a better preclinical study of its properties and its ability to kill cancer cells,” said Anthony Letai, a physician the Trump administration appointed as NCI director in September.

Letai did not cite new evidence that might have prompted the institute to research the effectiveness of the antiparasitic drug against cancer. The drug, largely used to treat people or animals for infections caused by parasites, is a popular dewormer for horses.

“We’ll probably have those results in a few months,” Letai said. “So we are taking it seriously.”

He spoke about ivermectin at a Jan. 30 event, “Reclaiming Science: The People’s NIH,” with National Institutes of Health Director Jay Bhattacharya and other senior agency officials at Washington, D.C.’s Willard Hotel. The MAHA Institute hosted the discussion, framed by the “Make America Healthy Again” agenda of Health and Human Services Secretary Robert F. Kennedy Jr. The National Cancer Institute is the largest of the NIH’s 27 branches.

During the covid pandemic, ivermectin’s popularity surged as fringe medical groups promoted it as an effective treatment. it isn’t effective against covid.

Ivermectin has become a symbol of resistance against the medical establishment among MAHA adherents and conservatives. Like-minded commentators and wellness and other online influencers have hyped — without evidence — ivermectin as a miracle cure for a host of diseases, including cancer. Trump officials have pointed to research on ivermectin as an example of the administration’s receptiveness to ideas the scientific establishment has rejected.

“If lots of people believe it and it’s moving public health, we as NIH have an obligation, again, to treat it seriously,” Bhattacharya said at the event. at Duke University, Bhattacharya recently said he wants the NIH to be “the research arm of MAHA.”

The decision by the world’s premier cancer research institute to study ivermectin as a cancer treatment has alarmed career scientists at the agency.

“I am shocked and appalled,” one NCI scientist said. “We are moving funds away from so much promising research in order to do a preclinical study based on nonscientific ideas. It’s absurd.”

Ñî¹óåú´«Ã½Ò•îl Health News granted the scientist and other NCI workers anonymity because they are not authorized to speak to the press and fear retaliation.

HHS and the National Cancer Institute did not answer Ñî¹óåú´«Ã½Ò•îl Health News’ questions on the amount of money the cancer institute is spending on the study, who is carrying it out, and whether there was new evidence that prompted NCI to look into ivermectin as an anticancer therapy. Emily Hilliard, an HHS spokesperson, said NIH is dedicated to “rigorous, gold-standard research,” something the administration has repeatedly professed.

A preclinical study is an early phase of research conducted in a lab to test whether a drug or treatment may be useful and to assess potential harms. These studies take place before human clinical trials.

The scientist questioned whether there is enough initial evidence to warrant NCI’s spending of taxpayer funds to investigate the drug’s potential as a cancer treatment.

The FDA has approved ivermectin for certain uses in humans and animals. Tablets are used to treat conditions caused by parasitic worms, and the FDA has approved ivermectin lotions to treat lice and rosacea. Two scientists involved in its discovery , tied to the drug’s success in treating certain parasitic diseases.

The FDA that large doses of ivermectin can be dangerous. Overdoses can cause seizures, comas, or death.

Kennedy, supporters of the MAHA movement, and some conservative commentators have promoted the idea that the government and pharmaceutical companies quashed ivermectin and other inexpensive, off-patent drugs because they’re not profitable for the drug industry.

“FDA’s war on public health is about to end,” Kennedy wrote in an that has since gone viral. “This includes its aggressive suppression of psychedelics, peptides, stem cells, raw milk, hyperbaric therapies, chelating compounds, ivermectin, hydroxychloroquine, vitamins, clean foods, sunshine, exercise, nutraceuticals and anything else that advances human health and can’t be patented by Pharma.”

Previous laboratory that ivermectin could have anticancer effects because it promotes cell death and inhibits the growth of tumor cells. “It actually has been studied both with NIH funds and outside of NIH funds,” Letai said.

However, there is no evidence that ivermectin is safe and effective in treating cancer in humans. from a small clinical trial that gave ivermectin to patients with one type of metastatic breast cancer, in combination with immunotherapy, found no significant benefit from the addition of ivermectin.

Some physicians are concerned that patients will delay or forgo effective cancer treatments, or be harmed in other ways, if they believe unfounded claims that ivermectin can treat their disease.

“Many, many, many things work in a test tube. Quite a few things work in a mouse or a monkey. It still doesn’t mean it’s going to work in people,” said Jeffery Edenfield, executive medical director of oncology for the South Carolina-based Prisma Health Cancer Institute.

Edenfield said cancer patients ask him about ivermectin “regularly,” mostly because of what they see on social media. He said he persuaded a patient to stop using it, and a colleague recently had a patient who decided “to forgo highly effective standard therapy in favor of ivermectin.”

“People come to the discussion having largely already made up their mind,” Edenfield said.

“We’re in this delicate time when there’s sort of a fundamental mistrust of medicine,” he added. “Some people are just not going to believe me. I just have to keep trying.”

by clinicians at Cincinnati Children’s Hospital Medical Center in Ohio detailed how an adolescent patient with metastatic bone cancer started taking ivermectin “after encountering social media posts touting its benefits.” The patient — who hadn’t been given a prescription by a clinician — experienced ivermectin-related neurotoxicity and had to seek emergency care because of nausea, fatigue, and other symptoms.

“We urge the pediatric oncology community to advocate for sensible health policy that prioritizes the well-being of our patients,” the clinicians wrote.

The lack of evidence about ivermectin and cancer hasn’t stopped celebrities and online influencers from promoting the notion that the drug is a cure-all. On a January 2025 episode of Joe Rogan’s podcast, actor Mel Gibson claimed that a combination of drugs that included ivermectin cured three friends with stage 4 cancer. The episode has been viewed more than 12 million times.

Lawmakers in a handful of states have made the drug available over the counter. And Florida — which, under Republican Gov. Ron DeSantis, has become a hotbed for anti-vaccine policies and the spread of public health misinformation — announced last fall that the state plans to fund research .

The Florida Department of Health did not respond to questions about that effort.

Letai, previously a Dana-Farber Cancer Institute oncologist, started at the National Cancer Institute after months of upheaval caused by Trump administration policies.

“What you’re hearing at the NIH now is an openness to ideas — even ideas that scientists would say, ‘Oh, there’s no way it could work’ — but nevertheless applying rigorous scientific methods to those ideas,” Bhattacharya said at the Jan. 30 event.

A second NCI scientist, who was granted anonymity due to fear of retaliation, said the notion that NIH was not open to investigating the value of off-label drugs in cancer is “ridiculous.”

“This is not a new idea they came up with,” the scientist said.

Letai didn’t elaborate on whether NCI scientists are conducting the research or if it has directed funding to an outside institution. Three-quarters of the cancer institute’s research dollars go to outside scientists.

He also aimed to temper expectations.

“At least on a population level,” Letai said, “it’s not going to be a cure-all for cancer.”

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

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NIH Grant Disruptions Slow Down Breast Cancer Research /health-industry/nih-grant-freeze-breast-cancer-research-slowed-harvard-lab/ Tue, 03 Feb 2026 10:00:00 +0000 /?post_type=article&p=2148735 Inside a cancer research laboratory on the campus of Harvard Medical School, two dozen small jars with pink plastic lids sat on a metal counter. Inside these humble-looking jars is the core of ’s current multiyear research project.

Brugge lifted up one of the jars and gazed at it with reverence. Each jar holds samples of breast tissue donated by patients after they underwent a tissue biopsy or breast surgery — samples that may reveal a new way to prevent breast cancer.

Brugge and her research team have analyzed the cell structure of more than 100 samples.

Using high-powered microscopes and complex computer algorithms, they diagram each stage in the development of breast cancer: from the first sign of cell mutation to the formation of tiny clusters, well before they are large enough to be considered tumors.

Their quest is to prevent breast cancer, a disease that afflicts roughly 1 in 8 U.S. women over their lifetimes, as well as some men. Their ultimate goal is to relieve the pain, suffering, and risk of death that accompany this disease. And their painstaking work, unspooling across six years of a seven-year, , has yielded results.

In late 2024, Brugge and her colleagues in breast tissue that contain the genetic seeds of breast tumors.

And they discovered that these “seed cells” are surprisingly common. In fact, they are present in the normal, healthy tissue of every breast sample her lab has examined, Brugge said, including samples from patients who haven’t had breast cancer but have had surgery for other reasons, such as breast reduction or a biopsy that proved benign.

The next research challenge for Brugge’s lab is clear: Find ways to detect, isolate, and terminate the mutant cells before they can spread and form tumors.

“I’m excited about what we’re doing right now,” Brugge said. “I think we could make a difference, so I don’t want to stop.”

Joan Brugge speaks to someone out of frame. She is holding a jar with a pink lid.
Brugge holds samples of breast tissue that are part of a multiyear research project at Harvard Medical School funded by a grant from the National Cancer Institute. (Robin Lubbock/WBUR)

Work in Brugge’s lab slowed significantly last year. In April, her from the National Cancer Institute at the National Institutes of Health was frozen, along with virtually all other federal money awarded to Harvard researchers.

The Trump administration said it was withholding the funds of antisemitism on campus.

Some of Brugge’s lab staff lost federal fellowships that funded their work. Brugge told others funded through the NIH grant that she couldn’t guarantee their salaries. In all, Brugge lost seven of her 18 lab employees.

In September, the funding for the NIH grant was restored. But in the intervening months, the Trump administration said Brugge and other Harvard researchers for the next round of multiyear grants.

A federal judge , but Brugge had missed the deadline to apply for renewal. So her current funding will end in August.

Brugge scrambled to secure private funding from foundations and philanthropists. She was then able to reinstate two positions for at least a year — but job applicants are wary.

Across the United States, the future of federal funding for cancer research is uncertain.

President Donald Trump has proposed by nearly 40% in the 2026 fiscal year.

In a , the White House said the “NIH has broken the trust of the American people with wasteful spending, misleading information, risky research, and the promotion of dangerous ideologies that undermine public health.”

But Congress has other plans: The released on Jan. 20 that would set the NIH’s budget at $48.7 billion, $415 million more than in the 2025 fiscal year.

In the meantime, advocates such as with the are reminding lawmakers that the cancer death rate has declined — — due in part to federally funded research advances.

“But we still have an incredible ways to go before we can say that we’ve changed the trajectory of cancer,” Fleury said. “There are still cancer types that are fairly lethal, and there are still populations of people for whom their experience of cancer is vastly different from other groups.”

Reductions in research funding will have a direct impact on treatment options for patients, Fleury said. For example, a 10% cut to the NIH budget would eventually result in two fewer new drugs or treatments per year, according to from the nonpartisan Congressional Budget Office.

A recent study looked at drugs that were developed through NIH-funded research and approved by the Food and Drug Administration since 2000. More than half those drugs would probably if the NIH had been operating with a 40% smaller budget.

“We can’t say, ‘But for that grant, that [specific] drug would not have come into existence,’” said , a co-author of the study and a professor at the Massachusetts Institute of Technology. But fewer drugs would have made it to market, he said. “It makes us at least want to pause and say, ‘What are we doing here? Are we shooting ourselves in the foot?’”

Amid all the uncertainty, Brugge has trouble focusing on her goal of finding new ways to prevent breast cancer.

Nowadays, she spends about half her time searching for new sources of funding, managing her remaining employees’ anxieties, and monitoring the most recent news about Harvard, the Trump administration, and the NIH and other federal agencies that have experienced grant freezes, staff layoffs, and other disruptions.

She’d rather return her attention to her ongoing investigations, which she’s confident could eventually save lives.

Joan Brugge sits with a colleague at a desk with a large microscope and a computer monitor. Brugge points to a scan seen on the monitor.
Brugge discusses an image from a gene-testing experiment with a colleague at her lab at Harvard Medical School. (Robin Lubbock/WBUR)

The breakdown of Brugge’s lab highlights another problem: The U.S. is kneecapping the next generation of cancer researchers. Her employees included , postdocs, and graduate students. Of the seven who left the lab in 2025, one left the U.S., one took a job at a health care management company, four went back to school, and one is still looking for work.

One of Brugge’s former staffers, Y., is a computational biologist. She helped design and run a tool that analyzes millions of breast tissue cells from the samples in the pink-lidded jars.

Y. moved to Switzerland in October to begin a PhD program. Ñî¹óåú´«Ã½Ò•îl Health News and NPR are identifying her by her middle initial because she plans to return to the U.S. for scientific conferences and worries that speaking publicly about her experience could risk future visa approvals.

“I thought the U.S. would be a safe place for scientists to learn and grow,” said Y., who moved to Boston from abroad for Harvard’s master’s degree program in bioinformatics. “I really hope that those who have the opportunities to study this further can fill in those missing pieces in cancer research.”

Brugge is no longer accepting job applicants from outside the U.S., even if they are top candidates, because she can’t afford to pay the Trump administration’s on visas for some foreign researchers.

The Association of American Universities and the U.S. Chamber of Commerce have , claiming the fee is misguided and illegal. The Trump administration said the fee would and improve opportunities for Americans.

Brugge doubts work in her lab will ever return to normal.

“There’ll always be, now, this existential threat to the research,” Brugge said. “I will definitely be concerned because we don’t know what’s going to happen in the future that might trigger a similar kind of action.”

Brugge has thought about shutting down her lab. But she still employs staff members whose future scientific careers are tied to finishing some of the research. And when she looks at those pink-lidded jars, she still sees so much promise.

This article is from a partnership that includes , , and Ñî¹óåú´«Ã½Ò•îl Health News.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

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Culture Wars Take Center Stage /podcast/what-the-health-429-obamacare-abortion-pill-mifepristone-hhs-january-15-2026/ Thu, 15 Jan 2026 20:20:00 +0000 /?p=2143097&post_type=podcast&preview_id=2143097 The Host
Julie Rovner photo
Julie Rovner Ñî¹óåú´«Ã½Ò•îl Health News Read Julie's stories. Julie Rovner is chief Washington correspondent and host of Ñî¹óåú´«Ã½Ò•îl Health News’ weekly health policy news podcast, "What the Health?" A noted expert on health policy issues, Julie is the author of the critically praised reference book "Health Care Politics and Policy A to Z," now in its third edition.

Millions of Americans are facing dramatically higher health insurance premium payments due to the Jan. 1 expiration of enhanced Affordable Care Act subsidies. But much of Washington appears more interested at the moment in culture war issues, including abortion and gender-affirming care.

Meanwhile, at the Department of Health and Human Services, personnel continue to be fired and rehired, and grants terminated and reinstated, leaving everyone who touches the agency uncertain about what comes next.

This week’s panelists are Julie Rovner of Ñî¹óåú´«Ã½Ò•îl Health News, Anna Edney of Bloomberg News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine, and Alice Miranda Ollstein of Politico.

Panelists

Anna Edney photo
Anna Edney Bloomberg News
Joanne Kenen photo
Joanne Kenen Johns Hopkins University and Politico
Alice Miranda Ollstein photo
Alice Miranda Ollstein Politico

Among the takeaways from this week’s episode:

  • Congress remains undecided on a deal to renew enhanced ACA premium subsidies, as it is on spending plans to keep the federal government running when the existing, short-term plan expires at the end of the month. While some of the bigger appropriations hang-ups are related to immigration and foreign affairs, there are also hurdles to passing spending for HHS.
  • ACA plan enrollment is down about 1.5 million compared with last year, with states reporting that many people are switching to cheaper plans or dropping coverage. Enrollment numbers are likely to drop further in the coming months as more-expensive premium payments come due and some realize they can no longer afford the plans they’re enrolled in.
  • A key Senate health committee on Wednesday hosted a hearing on the abortion pill mifepristone, focused on the safety concerns posed by abortion foes — though those concerns are unsupported by scientific research and decades of experience with the drug. Many abortion opponents are frustrated that the Trump administration has not taken aggressive action to restrict access to the abortion pill.
  • As the Trump administration moved this week to rehire laid-off employees and abruptly cancel, then restore, addiction-related grants, overall government spending is up, despite the administration’s stated goal of saving money by cutting the federal government’s size and activities. It turns out the churn within the administration is costing taxpayers more. And new data, revealing that more federal workers left on their own than were laid off last year, shows that a lot of institutional memory was also lost.

Also this week, Rovner interviews Ñî¹óåú´«Ã½Ò•îl Health News’ Elisabeth Rosenthal, who created the “Bill of the Month” series and wrote the latest installment, about a scorpion pepper, an ER visit, and a ghost bill. If you have a baffling, infuriating, or exorbitant bill you’d like to share with us, you can do that here.

Plus, for “extra credit” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: The New York Times’ “,” by Maxine Joselow.

Alice Miranda Ollstein: ProPublica’s “,” by Anna Clark.

Joanne Kenen: The New Yorker’s “,” by Dhruv Khullar.

Anna Edney: MedPage Today’s “,” by Joedy McCreary.

Also mentioned in this week’s podcast:

  • The Washington Post’s “,” by Paul Kane.
  • HealthAffairs’ “,” by Mica Hartman, Anne B. Martin, David Lassman, and Aaron Catlin.
  • Politico’s “,” by Alice Miranda Ollstein.
  • JAMA’s “,” by Sophie Dilek, Joanne Rosen, Anna Levashkevich, Joshua M. Sharfstein, and G. Caleb Alexander.
click to open the transcript Transcript: Culture Wars Take Center Stage

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.] 

Julie Rovner: Hello from Ñî¹óåú´«Ã½Ò•îl Health News and WAMU public radio in Washington, D.C., and welcome to What the Health? I’m Julie Rovner, chief Washington correspondent for Ñî¹óåú´«Ã½Ò•îl Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Jan. 15, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go. 

Today, we are joined via video conference by Anna Edney of Bloomberg News. 

Anna Edney: Hi, everyone. 

Rovner: Alice [Miranda] Ollstein of Politico. 

Alice Miranda Ollstein: Hello. 

Rovner: And Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine. 

Joanne Kenen: Hi, everybody. 

Rovner: Later in this episode, we’ll have my interview with Ñî¹óåú´«Ã½Ò•îl Health News’ Elisabeth Rosenthal, who reported and wrote the latest “Bill of the Month,” about an ER trip, a scorpion pepper, and a ghost bill. But first, this week’s news. Let’s start this week on Capitol Hill, where both houses of Congress are here and legislating. This week alone, the Senate rejected a Democratic effort to accept the House-passed bill that would renew for three years the Affordable Care Act’s expanded subsidies â€” the ones that expired Jan. 1.  

The Senate also turned back an effort to cancel the Trump administration’s regulation covering the ACA, which, although it has gotten far less attention than the subsidies, would also result in a lot of people losing or dropping health insurance coverage.  

Meanwhile, in the House, Republicans are struggling just to keep the lights on. Between resignations, illnesses, and deaths, House Republicans are very nearly â€” in the words of longtime Congress watcher  â€” a [majority] in name only, which I guess is pronounced “MINO.” Their majority is now so thin that one or two votes can hand Democrats a win, as we saw earlier this week in a surprise defeat on an otherwise fairly routine labor bill. Which brings us to the prospects for renewing those Affordable Care Act subsidies. When the dust cleared from last week’s House vote, 17 Republicans joined all the House’s Democrats to pass the bill and send it to the Senate. But it seems that the bipartisan efforts in the Senate to get a deal are losing steam. What’s the latest you guys are hearing? 

Ollstein: Yeah, so it wasn’t a good sign when the person who has sort of come out as a leader of these bipartisan negotiations, Ohio Sen. Bernie Moreno, at first came out very strong and said, We’re in the end zone. We’re very close to a deal. We’re going to have bill text. And that was several days ago, and now they’re saying that maybe they’ll have something by the end of the month. But the initial enthusiasm very quickly fizzled as they really got into the negotiations, and, from what my colleagues have reported, there’s still disagreements on several fronts, you know, including this idea of having a minimum charge for all plans, no zero-premium plans anymore, which the right says is to crack down on fraud, and the left says would really deter low-income people from getting coverage. And there, of course, is, as always, a fight about abortion, as we spoke about on this podcast before. There is not agreement on how Obamacare currently treats abortion, and thus there can be no agreement on how it should treat abortion. 

And so the two sides have not come to any kind of compromise. And I don’t know what compromise would be possible, because all of the anti-abortion activist groups and their allies in Congress, of which there are many, say that the only thing they’ll accept is a blanket national ban on any plan that covers abortion receiving a subsidy, and that’s a nonstarter for most, if not all, Democrats. So I don’t know where we go from here. 

Rovner: Well, we will talk more about both abortion and the ACA in a minute, but first, lawmakers have just over two weeks to finish the remaining spending bills, or else risk yet another government shutdown. They seem to [be] making some headway on many of those spending bills, but not so much on the bill that funds most of the Department of Health and Human Services. Any chance they can come up with a bill that can get 60 votes in the Senate and a majority in the much more conservative House? That is a pretty narrow needle to thread. I don’t think abortion is going to be a huge issue in Labor, HHS, because that’s where the Hyde Amendment lives, and we usually see the Hyde Amendment renewed. But, you know, I see a lot of Democrats and, frankly, Republicans in the Senate wanting to put money back for a lot of the things that HHS has cut, and the House [is] probably not so excited about putting all of that money back. I’m just wondering if there really is a deal to be had, or if we’re going to see for the, you know, however many year[s] in a row, another continuing resolution, at least for the Department of Health and Human Services. 

Ollstein: Well, you’re hearing a lot more optimism from lawmakers about the spending bill than you are about a[n] Obamacare subsidy deal or any of the other things that they’re fighting about. And I would say, on the spending, I think the much bigger fights are going to be outside the health care space. I think they’re going to be about immigration, with everything we’re seeing about foreign policy, whether and how to put restraints on the Trump administration, on both of those fronts. On health, yes, I think you’ve seen efforts to restore funding for programs that was slashed by the Trump administration, and you are seeing some Republican support for that. I mean, it impacts their districts and their voters too. So that makes sense. 

Kenen: We’ve also seen the Congress vote for spending that the administration hasn’t been spent. So Congress has just voted on a series of things about science funding and other health-related issues, including global health. But it remains to be seen whether this administration takes appropriations as law or suggestion. 

Rovner: So while the effort to revive the additional ACA subsidies appears to be losing steam, there does seem to be some new hope for a bipartisan health package that almost became law at the end of 2024, so 13 months ago. Back then, Elon Musk got it stripped from the year-end spending bill because the bill, or so Musk said, had gotten too big. That health package includes things like reforms for pharmacy benefits managers and hospital outpatient payments, and continued funding for community health centers. Could that finally become law? That thing that they said, Oh, we’ll pass it first thing next year, meaning 2025. 

Edney: I think it’s certainly looking more likely than the subsidies that we’ve been talking about. But I do think we’ve been here before several times, not just at the end of last year â€” but, like with these PBM reforms, I feel like they have certainly gotten to a point where it’s like, This is happening. It’s gonna happen. And, I mean, it’s been years, though, that we’ve been talking about pharmacy benefit manager reforms in the space of drug pricing. So basically, you know, from when [President Donald] Trump won. And so, you know, I say this with, like, a huge amount of caution: Maybe. 

Rovner: Yeah, we will, but we’ll believe it when â€¦ we get to the signing ceremony. 

Ollstein: Exactly. 

Rovner: Well, back to the Affordable Care Act, for which enrollment in most states end today. We’re getting an early idea of how many people actually are dropping coverage because of the expiration of those subsidies. Sign-ups on the federal marketplace are down about 1.5 million from the end of last year’s enrollment period, and that’s before most people have to pay their first bill. States that run their own marketplaces are also reporting that people are dropping coverage, or else trying to shift to cheaper plans. I’m wondering if these early numbers â€” which are actually stronger than many predicted, with fewer people actually dropping coverage â€” reflect people who signed up hoping that Congress might actually renew the subsidies this month. Since we kept saying that was possible. 

Ollstein: I would bet that most people are not following the minutiae of what’s happening on Capitol Hill and have no idea the mess we’re in, and why, and who’s responsible. I would love to be wrong about that. I would love for everyone to be super informed. Hopefully they listen to this podcast. But you know, I think that a lot of people just sign up year after year and aren’t sure of what’s going on until they’re hit with the giant bill.  

Rovner: Yeah. 

Ollstein: One thing I will point out about the emerging numbers is it does show, at least early indications, that the steps a lot of states are taking to make up for the shortfalls and put their own funding into helping people and subsidizing plans, that’s really working. You’re seeing enrollment up in some of those states, and so I wonder if that’ll encourage any others to get on board as well. 

Kenen: But â€¦ I think what Julie said is it’s â€¦ the follow-up is less than expected. But for the reasons Julie just said is that you haven’t gotten your bill yet. So either you haven’t been paying attention, or you’re an optimist and think there’ll be a solution. So, and people might even pay their first bill thinking that there’ll be a solution next month, or that we’re close. I mean, I would think there’d be drop-off soon, but there might be a steeper cliff a month or two from now, when people realize this is it for the year, and not just a tough, expensive month or two. So just because they’re not as bad as some people forecast doesn’t say that this is going to be a robust coverage year. 

Edney: And I think, I mean, they are the whole picture when you’re talking about who’s signing up, but a lot of these people that I’ve read about or heard about are on the radio programs and different things are signing up, are drastically changing their lives to be able to afford what they think might be their insurance. So how does that play out in other aspects? I think will be .. of the economy of jobs, like, where does that lead us? I think will be something to watch out for too. 

Rovner: And by the way, in case you’re wondering why health insurance is so expensive, we got the , and total health expenditures grew by 7.2% from the previous year to $5.3 trillion, or 18% of the nation’s GDP [gross domestic product], up from 17.7% the year before. Remember, these are the numbers for 2024, not 2025, but it makes it pretty hard for Republicans to blame the Affordable Care Act itself for rising insurance premiums. Insurance is more expensive because we’re spending more on health care. It’s not really that complicated, right? 

Kenen: This 17%-18% of GDP has been pretty consistent, which doesn’t mean it’s good; it just means it’s been around that level for many, many, many years. Despite all the talk about how it’s unsustainable, it’s been sustained, with pain, but sustained. $5.7 trillion, even if you’ve been doing this a long time â€¦ 

Rovner: It’s $5.3 trillion. 

Kenen: $5.3 trillion. It’s a mind-boggling number. It’s a lot of dollars! So the ACA made insurance more â€” the out-of-pocket cost of insurance for millions of Americans, 20-ish million â€” but the underlying burden we’ve not solved the — to use the word of the moment, the “affordability” crisis in health care is still with us and arguably getting worse. But like, I think we’re sort of numb. These numbers are just so insane, and yet you say it’s unsustainable, but â€¦ I think it was Uwe’s line, right? 

Rovner: It was, it was a famous Uwe Reinhardt line. 

Kenen: No, it’s sustainable, if we’re sustaining it at a high â€” in economically â€” zany price.  

Rovner: Right. 

Kenen: And, like, the other thing is, like, where is the money? Right? Everybody in health care says they don’t have any money, so I can’t figure out who has the $5 trillion. 

Rovner: Yeah, well, it’s not â€¦ it does not seem to be the insurance companies as much as it is, you know, if you look at these numbers â€” and I’ll post a link to them â€” you know, it’s hospitals and drug companies and doctors and all of those who are part of the health care industrial complex, as I like to call it. 

Kenen: All of them say they don’t have enough.  

Rovner: Right. All right. So we know that the Affordable Care Act subsidies are hung up over abortion, as Alice pointed out, and we know that the big abortion demonstration, the March for Life, is coming up next week, so I guess it shouldn’t be surprising that Senate health committee chairman and ardent anti-abortion senator Bill Cassidy would hold a hearing not on changes to the vaccine schedule, which he has loudly and publicly complained about, but instead about the reputed dangers of the abortion pill, mifepristone. Alice, like me, you watched yesterday’s hearing. What was your takeaway? 

Ollstein: So, you know, in a sense, this was a show hearing. There wasn’t a bill under consideration. They didn’t have anyone from the administration to grill. And so this is just sort of your typical each side tries to make their point hearing. And the bigger picture here is that conservatives, including senators and the activist groups who are sort of goading them on from the outside â€” they’re really frustrated right now about the Trump administration and the lack of action they’ve seen in this first year of this administration on their top priority, which is restricting the abortion pill. Their bigger goal is outlawing all abortion, but since abortion pills comprise the majority of abortions these days, that’s what they’re targeting. And so they’re frustrated that, you know, both [Robert F.] Kennedy [Jr.] and [Marty] Makary have promised some sort of review or action on the abortion pill, and they say, We want to see itWhy haven’t you done it yet? And so I think that pressure is only going to mount, and this hearing was part of that. 

Rovner: I was fascinated by the Louisiana attorney general saying, basically, the quiet part out loud, which is that we banned abortion, but because of these abortion pills, abortions are still going up in our state. That was the first time I think I’d heard an official say that. I mean that, if you wonder why they’re going after the abortion pill, that’s why â€” because they struck down Roe [v. Wade] and assumed that the number of abortions would go down, and it really has not, has it? 

Ollstein: That’s right. And so not only are people increasingly using pills to terminate pregnancies, but they’re increasingly getting them via telemedicine. And you know, that’s absolutely true in states with bans, but it’s also true in states where abortion is legal. You know, a lot of people just really prefer the telemedicine option, whether because it’s cheaper, or they live really far away from a doctor who is willing to prescribe this, or, you know, any other reasons. So the right â€” you know, again, including senators like Cassidy, but also these activist groups â€” they’re saying, at a bare minimum, we want the Trump administration to ban telemedicine for the pills and reinstate the in-person dispensing requirement. That would really roll back access across the country. But what they really want is for the pills to be taken off the market altogether. And they’re pretty open about saying that.  

Rovner: Well, rather convenient timing from the , which published a peer-reviewed study of 5,000 pages of documents from the FDA that found that over the last dozen years, when it comes to the abortion pill and its availability, the agency followed the evidence-based recommendations of its scientists every single time, except once, and that once was during the first Trump administration. Alice, is there anything that will convince people that the scientific evidence shows that mifepristone is both safe and effective and actually has a very low rate of serious complications? There were, how many, like 100, more than 100 peer-reviewed studies that basically show this, plus the experience of many millions of women in the United States and around the world. 

Ollstein: Well, just like I’m skeptical that there’s any compromise that can be found on the Obamacare subsidies, there’s just no compromise here. You know, you have the groups that are making these arguments about the pills’ safety say very openly that, you know, the reason they oppose the pills is because they cause abortions. They say it can’t be health care if it’s designed to end a life, and that kind of rhetoric. And so the focus on the rate of complication â€¦ I mean, I’m not saying they’re not genuinely concerned. They may be, but, you know, this is one of many tactics they’re using to try to curb access to the pills. So it’s just one argument in their arsenal. It’s not their, like, primary driving, overriding goal is, is the safety which, like you said, has been well established with many, many peer-reviewed studies over the last several years. 

¸é´Ç±¹²Ô±ð°ù:ÌýSo, in between these big, high-profile anti-abortion actions like Senate hearings, those supporting abortion rights are actually still prevailing in court, at least in the lower courts. This week, [a lawsuit filed by the American Civil Liberties Union and the National Family Planning and Reproductive Health Association against the Trump administration after the administration also quietly gave Planned Parenthood and other family planning groups] back the Title X family planning money that was appropriated to it by Congress. That was what Joanne was referring to, that Congress has been appropriating money that the administration hasn’t been spending. But this wasn’t really the big pot of federal money that Planned Parenthood is fighting to win back, right?

Ollstein: It was one pot of money they’re fighting to win back. But yes, the much bigger Medicaid cuts that Congress passed over last summer, those are still in place. And so that’s an order of magnitude more than this pot of Title X family planning money that they just got back. So that aside, I’ve seen a lot of conservatives conflate the two and accuse the Trump administration of violating the law that Congress passed and restoring funding to Planned Parenthood. This is different funding, and it’s a lot less than the cuts that happened. And so I talked to the organizations impacted, and it was clear that even though they’re getting this money back, for some it came too late, like they already closed their doors and shut down clinics in a lot of states, and they can’t reopen them with this chunk of money. This money is when you give a service to a patient, you can then submit for reimbursement. And so if the clinic’s not there, it’s not like they can use this money to, like, reopen the clinic, sign a lease, hire people, etc.  

Rovner: Yeah. The wheels of the courts, as we have seen, have moved very slowly. 

OK, we’re going to take a quick break. We will be right back. 

So while abortion gets most of the headlines, it’s not the only culture war issue in play. The Supreme Court this week heard oral arguments in a case challenging two of the 27 state laws barring transgender athletes from competing on women’s sports teams. Reporters covering the argument said it seemed unlikely that a majority of justices would strike down the laws, which would allow all of those bans to stand. Meanwhile, the other two branches of the federal government have also weighed in on the gender issue in recent weeks. The House passed a bill in December, sponsored by now former Republican congresswoman Marjorie Taylor Greene that would make it a felony for anyone to provide gender-affirming care to minors nationwide. And the Department of Health and Human Services issued proposed regulations just before Christmas that wouldn’t go quite that far, but would have roughly the same effect. The regulations would ban hospitals from providing gender-affirming care to minors or risk losing their Medicare and Medicaid funding, and would bar funding for gender-affirming care for minors by Medicaid or the Children’s Health Insurance Program. At the same time, Health and Human Services Secretary Kennedy issued a declaration, which is already being challenged in court, stating that gender-affirming care, quote, “does not meet professionally recognized standards of health care,” and therefore practitioners who deliver it can be excluded from federal health programs. I get that sports team exclusions have a lot of public support, but does the public really support effectively ending all gender-affirming care for minors? That’s what this would do. 

Edney: Well, I think that when a lot of people hear that, they think of surgery, which is the much, much, much, much, much less likely scenario here that we’re even talking about. And so those who are against it have done an effective job of making that the issue. And so there â€¦ who support gender-affirming care, who have looked into it, would see that a lot of this is hormone treatment, things like that, to drugs â€¦  

Rovner: Puberty blockers! 

Edney: â€¦ they’re taking â€” exactly â€” and so it’s not, this isn’t like a permanent under-the-knife type of thing that a lot of people are thinking about, and I think, too, talking about, like mental health, with being able to get some of these puberty blockers, the effect that it can have on a minor who doesn’t want to live the way they’ve been living, so it’s so helpful to them. So I think that there’s just a lot that has, you know, there’s been a lot of misinformation out there about this, and I feel like that that’s kind of winning the day. 

Kenen: I think, like, from the beginning, because, like, five or six years ago was the first time I wrote about this. The playbook has been very much like the anti-abortion playbook. They talk about it in terms of protecting women’s health, and now they’re talking about it in protecting children’s health. And, as Anna said, they’re using words like mutilation. Puberty blockers are not mutilation. Puberty blockers are a medication that delays the onset of puberty, and it is not irreversible. It’s like a brake. You take your foot off the brake, and puberty starts. There’s some controversy about what age and how long, and there’s some possible bone damage. I mean, there’s some questions that are raised that need to be answered, but the conversation that’s going on now â€” most of the experts in this field, who are endocrinologists and psychologists and other people who are working with these kids, cite a lot of data saying that not only this is safe, but it’s beneficial for a kid who really feels like they’re trapped in the wrong body. So you know, I think it’s really important to repeat â€¦ the point that Anna made, you know, 12-year-olds are not getting major surgery. Very few minors are, and when they are, it’s closer â€¦ they may be under 18, it’s rare. But if you’re under 18, you’re closer to 18, it’s later in teens. And it’s not like you walk into an operating room and say, you know, do this to me. There’s years of counseling and evaluation and professional teams. It really did strike a nerve in the campaign. I think Pennsylvania, in particular. This is something that people don’t understand and get very upset about, and the inflammatory language, it’s not creating understanding. 

Rovner: We’ll see how this one plays out. Finally, this week, things at the Department of Health and Human Services continues to be chaotic. In the latest round of “we’re cutting you off because you don’t agree with us,” the Substance Abuse and Mental Health Services Administration sent hundreds of letters Tuesday to grantees canceling their funding immediately. It’s not entirely clear how many grants or how much money was involved, but it appeared to be something in the neighborhood of $2 billion â€” that’s around a fifth of SAMHSA’s entire budget. SAMHSA, of course, funds programs that provide addiction and mental health treatment, treatment for homelessness and suicide prevention, among other things. Then, Wednesday night, after a furious backlash from Capitol Hill and just about every mental health and substance abuse group in the country, from what I could tell from my email, the administration canceled the cuts. Did they miscalculate the scope of the reaction here, or was chaos the actual goal in this?  

Edney: That is a great question. I really don’t know the answer. I don’t know what it could serve anyone by doing this and reversing it in 24 hours, as far as the chaos angle, but it does seem, certainly, like there was a miscalculation of how Congress would react to this, and it was a bipartisan reaction that wanted to know why, what is it even your justification? Because these programs do seem to support the priorities of this administration and HHS. 

Rovner: I didn’t count, but I got dozens of emails yesterday.  

Edney: Yeah. 

Rovner: My entire email box was overflowing with people basically freaking out about these cuts to SAMHSA. Joanne, you wanted to say something? 

Kenen: I think that one of the shifts over â€” I’m not exactly sure how many years â€” 7, 8, 9, years, whatever we’ve been dealing with this opioid crisis, the country has really changed and how we see addiction, and that we are much more likely to view addiction not as a criminal justice issue, but as a mental health issue. It’s not that everybody thinks that. It’s not that every lawmaker thinks that, but we have really turned this into, we have seen it as, you know, a health problem and a health problem that strikes red states and blue states. You know, we are all familiar with the “deaths of despair.” Many of us know at least an acquaintance or an acquaintance’s family that have experienced an overdose death. This is a bipartisan shift. It is, you know, you’ve had plenty of conservatives speaking out for both more money and more compassion. So I think that the backlash yesterday, I mean, we saw the public backlash, but I think there was probably a behind-the-scenes â€” some of the “Opioid Belts” are very conservative states, and Republican governors, you know, really saying we’ve had progress. Right? The last couple of years, we have made progress. Fatal overdoses have gone down, and Narcan is available. And just like our inboxes, I think their telephones, they were bombarded.  

Rovner: Yeah. Well, meanwhile, several hundred workers have reportedly been reinstated at the National Institute of Occupational Safety and Health â€” that’s a subagency of CDC [the Centers for Disease Control and Prevention]. Except that those RIF [reduction in force] cancellations came nine months after the original RIFs, which were back in April. Does the administration think these folks are just sitting around waiting to be called back to work? And in news from the National Institutes of Health, Director Jay Bhattacharya told a podcaster last week that the DEI-related [diversity, equity, and inclusion] grants that were canceled and then reinstated due to court orders are likely to simply not be renewed. And at the FDA, former longtime drug regulator Richard Pazdur said at the J.P. Morgan [Healthcare] Conference in San Francisco this week that the firewall between the political appointees at the agency and its career drug reviewers has been, quote, “breached.” How is the rest of HHS expected to actually, you know, function with even so much uncertainty about who works there and who’s calling the shots? 

Ollstein: Not to mention all of this back and forth and chaos and starting and stopping is costing more, is costing taxpayers more. Overall spending is up. After all of the DOGE [Department of Government Efficiency] and RIFs and all of it, they have not cut spending at all because it’s more expensive to pay people to be on administrative leave for a long time and then try to bring them back and then shut down a lab and then reopen a lab. And all of this has not only meant, you know, programs not serving people, research not happening, but it hasn’t even saved the government any money, either. 

Kenen: Like, you know, the game we played when we were kids, remember, “Red Light-Green Light,” you know, you’d run in one direction, you run back. And if you were 8 years old, it would end with someone crying. And that’s sort of the way we’re running the government these days [laughs]. The amount of people fired, put on leave. The CDC has had this incredible yo-yoing of people. You can’t even keep track. You don’t even know what email to use if you’re trying to keep in touch with them anymore. The churn, with what logic? It’s, as Alice said, just more expensive, but it’s, it’s also just â€¦ like you can’t get your job done. Even if you want a smaller government, which many of conservatives and Trump people do, you still want certain functions fulfilled. But there’s still a consensus in society that we need some kind of functioning health system and health oversight and health monitoring. I mean, the American public is not against research, and the American public is not against keeping people alive. You know, the inconsistency is pretty mind-boggling. 

Edney: Well, there’s a lot of rank-and-file, but we’re seeing a lot of heads of parts of the agencies where, like at the FDA, with the drug center, or many of the different institutes at NIH that really don’t have anyone in place that is leading them. And I think that that, to me, like this is just my humble opinion, is it kind of seems like the message as anybody can do this part, because it’s all coming from one place. There’s really just one leader, essentially, RFK, or maybe it’s Trump, or they want everyone to do it the way that they’re going to comply with the different, like you said, everyone wants research, but I, Joanne, but I do think they only want certain kinds of research in this case. So it’s been interesting to watch how many leaders in these agencies that are going away and not being replaced. 

Rovner: And all the institutional memory that’s walking out the door. I mean, more people â€” and to Alice’s point about how this hasn’t saved money â€” more people have taken early retirement than have been actually, you know, RIF’d or fired or let go. I mean, they’ve just â€¦ a lot of people have basically, including a lot of leaders of many of these agencies, said, We just don’t want to be here under these circumstancesBye. Assuming at some point this government does want to use the Department of Health and Human Services to get things done, there might not be the personnel around to actually effectuate it. But we will continue to watch that space. 

OK, that’s this week’s news. Now we will play my “Bill of the Month” interview with Elisabeth Rosenthal, and then we will come back and do our extra credits. 

I am pleased to welcome back to the podcast Elisabeth Rosenthal, senior contributing editor at KFF Health News and originator of our “Bill of the Month” series, which in its nearly eight years has analyzed nearly $7 million in dubious, infuriating, or inflated medical charges. Libby also wrote the latest “Bill of the Month,” which we’ll talk about in a minute. Libby, welcome back to the podcast. 

Elisabeth Rosenthal: Thanks for having me back. 

Rovner: So before we get to this month’s patient, can you reflect for a moment on the impact this series has had, and how frustrated are you that eight years on, it’s as relevant as it was when we began? 

Rosenthal: We were worried it wouldn’t last a year, and here we are, eight years later, still finding plenty to write about. I mean, we’ve had some wins. I think we helped contribute to the No Surprises Act being passed. There are states clamping down on facility fees, you know, and making sure that when you get something done in a hospital rather than an outpatient clinic, it’s the same cost. The country’s starting to address drug prices. But, you know, we seem to be the billing police, and that’s not good. We’ve gotten a lot of bills written off for our individual patients. Suddenly, when a reporter calls, they’re like, Oh, that was a mistake or Yeah, we’re going to write that off. And I’m like, You’re not writing that off; that shouldn’t have been billed. So sadly, the series is still going strong, and medical billing has proved endlessly creative. And you know, I think the sad thing for me is our success is a sign of a deeply, deeply dysfunctional system that has left, as we know, you know, 100 million adult Americans with medical debt. So we will keep going until it’s solved, I hope. 

Rovner: Well, getting on to this month’s patient, he gives new meaning to the phrase “It must have been something I ate.” Tell us what it was and how he ended up in the emergency room. 

Rosenthal: Well, Maxwell [Kruzic] loves eating spicy foods, but he’s never had a problem with it. And suddenly, one night, he had just excruciating, crippling abdominal pain. He drove himself to the emergency room. It was so bad he had to stop three times, and when he got there, it was mostly on the right-lower quadrant. You know, the doctors were so convinced, as he was, that he had appendicitis, that they called a surgeon right away, right? So they were all like, ready to go to the operating room. And then the scan came back, and it was like, whoops, his appendix is normal. And then, oh, could he have kidney stones? And it’s like no sign of that either. And finally, he thought, or someone asked, Well, what did you eat last night? And of course, Maxwell had ordered the hottest chili peppers from a bespoke chili pepper-growing company in New Mexico. They have some chili pepper rating of 2 million [Scoville heat units], which is, like, through the roof, and it was a reaction to the chili peppers. I didn’t even know that could happen, and I trained as a doctor, but I guess your intestines don’t like really, really, really hot stuff. 

Rovner: So in the end, he was OK. And the story here isn’t even really about what kind of care he got, or how much it cost. The $8,000 the hospital charged for his few hours in the ER doesn’t seem all that out of line compared to some of the bills we’ve seen. What was most notable in this case was the fact that the bill didn’t actually come until two years later. How much was he asked to pay two years after the hot pepper incident? 

Rosenthal: Well, he was asked to pay a little over $2,000, which was his coinsurance for the emergency room visit. And as he said, you know, $8,000 â€¦ now we go, well, that’s not bad. I mean, all they did, actually, was do a couple of scans and give him some IV fluids. But in this day and age, you’re like, wow, he got away â€” you know, from a “Bill of a Month” perspective, he got away cheap, right? 

Rovner: But I would say, is it even legal to send a bill two years after the fact? Who sends a bill two years later? 

Rosenthal: That’s the problem, like, and Maxwell â€” he’s a pretty smart guy, so he was checking his portal repeatedly. I mean, he paid something upfront at the ER, and he kept thinking, I must owe something. And he checked and he checked and he checked and it kept saying zero. He actually called his insurer and to make sure that was right. And they said, No, no, no, it’s right. You owe zero. And then, you know, after like, six months, he thought, I guess I owe zero. But then he didn’t think about it, and then almost two years later, this bill arrives in the mail, and he’s like, What?! And what I discovered, which is a little disturbing, is it is not, I wouldn’t say normal, but we see a bunch of these ghost bills at “Bill of the Month,” and in many cases, it’s legal, because of what was going on in those two-year periods. And of course, I called the hospital, I called the insurer, and they were like, Yeah, you know, someone was away on vacation, and someone left their job, and we couldn’t â€¦ you know, the hospital billed them correctly. And the hospital said, No, we didn’t. And they were just kind of doing the usual back-end negotiations to figure out what a service is worth. And when they finally agreed two years later what should be paid, that’s when they sent Maxwell the bill. And the problem is, whether it’s legal really depends on your insurance contracts, and whether they allow this kind of late billing. I do not know to this day if Maxwell’s did, because as soon as I called the insurer and the hospital, they were like, Never mind. He doesn’t owe anything. And you know, as he said, he’s a geological engineer. He has lots of clients, and as he said, you know, if I called them two years later and said, Whoops, I forgot to bill for something, they would be like, Forget it! you know. So I do think this is something that needs to be addressed at a policy level, as we so often discover on “Bill of the Month.” 

Rovner: So what should you do if you get one of these ghost bills? I should say I’m still negotiating bills from a surgery that I had six months ago. So I guess I should count myself lucky. 

Rosenthal: Well, I think you should check with your insurer and check with the hospital. I think more with your insurer â€” if the contract says this is legal to bill. It’s unclear to me, in this case, whether it was. The hospital was very much like, Oh, we made a mistake; because it took so long, we actually couldn’t bill Maxwell. So I think in his case, it probably was in the contract that this was too late to bill. But, you know, I think a lot of hospitals, I hate to say it, have this attitude. Well, doesn’t hurt to try, you know, maybe they’ll pay it. And people are afraid of bills, right? They pay them.  

Rovner: I know the feeling. 

Rosenthal: Yeah, I do think, you know, they should check with their insurer about whether there’s a statute of limitations, essentially, on billing, because there may well be and I would say it’s a great asymmetry, because if you submit an insurance claim more than six months late, they can say, Well, we won’t pay this

Rovner: And just to tie this one up with a bow, I assume that Maxwell has changed his pepper-eating ways, at least modified them? 

Rosenthal: He said he will never eat scorpion peppers again. 

Rovner: Libby Rosenthal, thank you so much. 

Rosenthal: Oh, sure. Thanks for having me. 

Rovner: OK, we’re back, and now it’s time for our extra-credit segment. That’s where we each recognize a story we read this week we think you should read, too. Don’t worry if you miss it. We will post the links in our show notes on your phone or other mobile device. Anna, why don’t you start us off this week? 

Edney: Sure. So my extra credit is from MedPage Today: “.” I appreciated this article because it answered some questions that I had, too, after the sweeping change to the childhood vaccine schedule. There was just a lot of discussions I had about, you know, well, what does this really mean on the ground? And will parents be confused? Will pediatricians â€” how will they be talking about this? You know, will they stick to the schedule we knew before? And there was an article in JAMA Perspectives that lays out, essentially, to clinicians, you know, that they should not fear malpractice .. issues if they’re going to talk about the old schedule and not adhere to the newer schedule. And so it lays out some of those issues. And I thought that was really helpful. 

Rovner: Yeah, this was a big question that I had, too. Alice, why don’t you go next? 

Ollstein: Yeah, so I have a piece from ProPublica. It’s called “.” So this is about how there’s been this huge push on the right to end public water fluoridation that has succeeded in a couple places and could spread more. And the proponents of doing that say that it’s fine because there are all these other sources of fluoride. You can get a treatment at the dentist, you can get it in stuff you buy at the drugstore and take yourself. But at the same time, the people who arepushing for ending fluoridated public drinking water are also pushing for restricting those other sources. There have been state and federal efforts to crack down on them, plus all of the just rhetoric about fluoride, which is very misleading. It misrepresents studies about its alleged neurological impacts. But it also, that kind of rhetoric makes people afraid to have fluoride in any form, and people are very worried about that, what that’s going to do to the nation’s teeth? 

Rovner: Yeah, it’s like vaccines. The more you talk it down, the less people want to do it. Joanne. 

Kenen: This is a piece by Dhruv Khullar in The New Yorker called “,” and it was really great, because there’s certain things I think that we who â€” like, I don’t know how all of you watch it â€” but like, there’s certain things that didn’t even strike me, because I’m so used to writing about, like, the connection between poverty, social determinants of health, and, like, of course, people who come to the ED [emergency department] have, you know, homelessness problems and can’t afford food and all that. But Dhruv talked about how it sort of brought that home to him, how our social safety net, the holes in it, end up in our EDs. And he also talked about some of it is dramatized more for TV, that not everybody’s heart stops every 15 minutes. He said that sort of happens to one patient a day. But he talked about compassion and how that is rediscovered in this frenetic ED/ER scene. It’s just a very thoughtful piece about why we all love that TV show. And it’s not just because of Noah Wyle. 

Rovner: Although that helps. My extra credit this week is from The New York Times. It’s called “,” by Maxine Joselow. And while it’s not about HHS, it most definitely is about health. It seems that for the first time in literally decades, the Environmental Protection Agency will no longer calculate the cost to human health when setting clean air rules for ozone and fine particulate matter, quoting the story: “That would most likely lower costs for companies while resulting in dirtier air.” This is just another reminder that the federal government is charged with ensuring the help of Americans from a broad array of agencies, aside from HHS â€” or in this case, not so much.  

OK, that’s this week’s show. As always, thanks to our editor, Emmarie Huetteman, and our producer-engineer, Francis Ying. We also had help this week from producer Taylor Cook. A reminder: What the Health? is now available on WAMU platforms, the NPR app, and wherever you get your podcasts, as well as, of course, at kffhealthnews.org. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can find me still on X , or on Bluesky . Where are you folks hanging these days? Alice. 

Ollstein: Mostly on Bluesky  and still on X . 

Rovner: Joanne. 

Kenen: I’m mostly on  or on  . 

Rovner: Anna. 

Edney:  or X . 

Rovner: We will be back in your feed next week. Until then, be healthy. 

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Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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US Cancer Registries, Constrained by Trump Policies, To Recognize Only ‘Male’ or ‘Female’ Patients /health-industry/transgender-patients-us-cancer-registries-trump-only-male-female-unknown/ Fri, 21 Nov 2025 10:00:00 +0000 /?post_type=article&p=2121957 The top authorities of U.S. cancer statistics will soon have to classify the sex of patients strictly as male, female, or unknown, a change scientists and advocates say will harm the health of transgender people, one of the nation’s most marginalized populations.

Scientists and advocates for trans rights say the change will make it much harder to understand cancer diagnoses and trends among the trans population. Certain studies have shown that transgender people are more likely to use tobacco products or less likely to receive routine cancer screenings — factors that could put them at higher risk of disease.

The change is a consequence of Trump administration policies recognizing only “male” and “female” sexes, according to cancer researchers.

Scientists said the change will affect all cancer registries, in every state and territory, because they receive federal funding. Starting in 2026, registries funded through the Centers for Disease Control and Prevention and the National Cancer Institute as male, female, or not stated/unknown. And federal health agencies will receive data only on cancer patients classified that way.

Registries whether a cancer patient’s sex is “male,” “female,” “other,” various options for “transsexual,” or that the patient’s sex is not stated or unknown.

President Donald Trump in January issued an stating that the government would recognize only male and female sexes. Cancer registry officials said the federal government directed them to revise how they collect data on cancer patients.

“In the U.S., if you’re receiving federal money, then we, essentially, we weren’t given any choice,” Eric Durbin, director of the Kentucky Cancer Registry and president of the North American Association of Central Cancer Registries, told Ñî¹óåú´«Ã½Ò•îl Health News. NAACCR, which receives federal funds, maintains cancer reporting standards across the U.S. and Canada.

Officials will need to classify patients’ sex as unknown when a “patient’s sex is documented as other than male or female (e.g., non-binary, transsexual), and there is no additional information about sex assigned at birth,” the new standard says.

Missing the Big Picture

Researchers said they do not have high-quality population-level data on cancer incidence in transgender people but had been making inroads at improving it — work now at risk of being undone.

“When it comes to cancer and inequities around cancer, you can use the cancer registries to see where the dirtiest air pollution is, because lung cancer rates are higher in those areas. You can see the impact of nuclear waste storage because of the types of cancers that are higher in those ZIP codes, in those areas of the country,” said Shannon Kozlovich, who is on the executive committee of the California Dialogue on Cancer.

“The more parts of our population that we are excluding from this dataset means that we are not going to know what’s happening,” she said. “And that doesn’t mean that it’s not happening.”

For decades, cancer registries have been the most comprehensive U.S. surveillance tool for understanding cancer incidence and survival rates and identifying troubling disease trends. Each year, cancer cases are reported by hospitals, pathology labs, and other health facilities into regional and statewide cancer registries. The compiled data documents cancer and mortality rates among regions, races, sexes, and age groups.

Two federal programs serve as the top authorities on cancer statistics, with information on tens of millions of cases. The CDC’s National Program of Cancer Registries provides funding to organizations in 46 states, the District of Columbia, Puerto Rico, the U.S. Virgin Islands, and the U.S. Pacific Island territories. Its data represents . The National Cancer Institute’s Surveillance, Epidemiology, and End Results program, known as SEER, collects and publishes data from registries covering the U.S. population.

The information published by cancer registries has led to changes in treatment and  prevention, and the enactment of other policies designed to reduce diagnosis rates and mortality.

For example, data collected by cancer registries was essential in identifying among people . As a result, U.S. guidelines that adults start screenings at age 45 rather than 50.

States have enacted their own measures. Lara Anton, spokesperson for the Texas Department of State Health Services, said epidemiologists with the Texas Cancer Registry in 2018 found that the state had the nation’s highest incidence rates of hepatocellular carcinoma, a liver cancer more common in men than women. The Cancer Prevention and Research Institute of Texas aimed at reversing rising rates of liver cancer. The Texas Cancer Registry joined SEER in 2021.

“Once a cancer patient is entered into a cancer registry, we follow those patients for the rest of their lives. Because we really need to know, do patients survive for different types of cancer and different stages of cancer?” Durbin said. “That’s incredibly important for public policies.”

The North American Association of Central Cancer Registries maintains national standards outlining what kind of data registries collect for each diagnosis. It develops the list in partnership with the CDC, the National Cancer Institute, and other organizations.

For any given patient, under NAACCR’s standards, Durbin said, registries collect more than 700 pieces of information, including demographics, diagnosis, treatment, and length of survival. CDC and NCI-funded registries must specify the sex of each patient.

The NAACCR definitions and accompanying data standards are designed to ensure that registries collect case data uniformly. “Everyone essentially follows the standards” that NAACCR develops, Durbin said. Although registries can collect state-specific information, researchers said they need to follow those standards when sending cancer data to the federal government.

In an emailed statement, Department of Health and Human Services spokesperson Andrew Nixon said, “HHS is using biological science to guide policy, not ideological agendas that the Biden administration perpetrated.”

‘Backwards’ Progress

NAACCR routinely publishes updated guidelines. But the change to the “sex” category to remove transgender options in 2026 was an emergency move due to Trump administration policies, Kozlovich said. She was among a group that had pushed for changes in cancer data collection to account for sex and gender identity as separate data points.

According to an by the Williams Institute at the UCLA School of Law, 2.8 million people age 13 and older identify as transgender.

Scientists and trans rights advocates said in interviews that there are troubling signs that may make transgender people more likely to develop cancer or experience worse health outcomes than others.

“Without evidence of our health disparities, you take away any impetus to fix them,” said Scout, executive director of the LGBTQIA+ Cancer Network.

A study published in 2022 found that transgender and gender-diverse populations were as likely as cisgender people to report active use of cigarettes, e-cigarettes, or cigars. Tobacco use is a leading cause of cancer and death from cancer.

A concluded in 2019 that transgender patients were less likely to receive recommended screenings for breast, cervical, and colorectal cancers. And a from researchers at Stanford Medicine found that LGBTQ+ patients were nearly three times as likely to experience breast cancer recurrence as cisgender heterosexual people.

Scarlett Lin Gomez, an epidemiologist at the University of California-San Francisco and the director of the Greater Bay Area Cancer Registry, said that for at least 10 years the NCI had been interested in improving its ability to monitor cancer burden across patient populations with different sexual orientations and gender identities. Cancer registries are a logical place to start because that is what they’re set up to do, she said.

There’s been “slow but good progress,” Gomez said. “But now we’ve completely, personally, I think, regressed backwards.”

The decision not to capture transgender identity in cancer patients is just one change registries have confronted under the Trump administration, according to scientists leading surveillance efforts and state health agencies. An HHS mandate to reduce spending on contracts led to funding cuts for cancer registries in NCI’s SEER program. Scientists said CDC funds for registries haven’t been cut; however, the White House’s proposed fiscal 2026 budget aims to eliminate funding for the National Program of Cancer Registries.

Among the Trump administration’s other actions targeting trans people are canceling research grants for studies on LGBTQ+ health, dismantling the National Institutes of Health’s office for sexual and gender minority health, and stopping specialized services for LGBTQ+ youth on the 988 national suicide prevention hotline.

Without data, researchers can’t make a case to fund research that may help trans patients, Gomez said. “It’s erasure.”

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

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Watch: Patient Numbers at NIH Hospital Tumble After Trump Cuts /news/watch-patients-drop-national-institutes-of-health-clinical-center/ Thu, 11 Sep 2025 09:00:00 +0000 /?post_type=article&p=2086699

Government documents viewed by Ñî¹óåú´«Ã½Ò•îl Health News show a drop in patients receiving care this year at the National Institutes of Health’s renowned research hospital, a 200-bed facility at NIH headquarters in Maryland. 

We previously reported a decrease in the number of patients being treated at the NIH Clinical Center from February through April. Since then, we’ve obtained newer data showing the drop has continued.

As of mid-August, the average daily number of patients treated at the hospital was around 60. There has been a steady drop since February, coinciding with the Trump administration’s mass firings of government employees, its broad immigration crackdown, and the gutting of scientific research.

By contrast, last October, about 80 patients a day, on average, were at the hospital, the documents show.

Current and former government workers cite multiple reasons for the decline. An exodus of clinicians, scientists, and other staffers has limited the number of people who can be treated. Researchers are leaving, which means they’re not recruiting patients to come to the NIH for trials. 

And, the workers say, it’s likely that fewer patients who lack legal status in the U.S. are seeking care at the NIH hospital. That’s because of the Trump administration’s immigration policies and the federal government’s tighter rules for visitors from abroad.

In a statement, HHS spokesperson Andrew Nixon said the decline in the number of patients “has been ongoing for years” and the clinical center “remains fully operational and continues to provide world-class clinical research and patient care.”

Are you a cancer patient whose care at the National Institutes of Health Clinical Center in Maryland, or another hospital, has been affected by the Trump administration’s cuts? Are you a family member or caregiver of a cancer patient who has received care at the NIH? We’d like to hear about your experience. Tell us here.

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

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Changes at NIH Give Political Appointees Greater Power To Fund or Block Research /health-industry/nih-grants-trump-political-appointees-agenda-alignment-peer-review/ Wed, 03 Sep 2025 09:00:00 +0000 /?post_type=article&p=2081630 The Trump administration has given notice that political appointees, rather than scientists, will ultimately decide who gets grant money from the world’s largest biomedical research funder — the federal government’s National Institutes of Health.

In , President Donald Trump announced that political officers would have the power to summarily cancel any federal grant, including for scientific work, that is not “consistent with agency priorities.” Senior officials should not “routinely defer” to recommendations from peer reviewers, who have provided the backbone of federal science funding for eight decades.

NIH Director Jay Bhattacharya reinforced the message in an Aug. 15 internal memorandum stating that political priorities may override the scoring system provided by outside experts appointed to hundreds of review panels.

“While the score and critiques an application receives in peer review are important factors in determining the scientific merit of a proposal,” his memo stated, NIH institutes and centers should not rely on the scientific merit rankings “in developing their final pay plans.”

Like ongoing conflicts at the Centers for Disease Control and Prevention and the Federal Reserve, NIH scientists told Ñî¹óåú´«Ã½Ò•îl Health News, the disruption of the peer review process represents an attack on agency expertise that the country has relied on for decades.

Although the priorities of top agency staffers have always influenced some NIH funding, those people were nearly always career scientists in the past. By downgrading its peer review process, the NIH could allow political appointees who now occupy key positions to stop grants that typically would be funded, and to fund grants they prefer that don’t necessarily meet rigorous scientific standards, a dozen current and former NIH officials told Ñî¹óåú´«Ã½Ò•îl Health News.

Bhattacharya’s guidelines “open the door to the politicization of NIH research,” said Jenna Norton, a program officer in the National Institute of Diabetes and Digestive and Kidney Diseases.

“Peer review is fundamental and makes sure we’re doing the best science,” she said. “If you’re going to ignore that, the political appointee gets to make the final call.”

NIH spokesperson Amanda Fine said that peer review would continue to be the cornerstone of the NIH’s funding decisions but that funding would become less dependent on reviewers’ rankings of grant proposals.

This will “ensure consistent, transparent, and strategic funding decisions that align with the agency’s mission, maximize public health impact, and responsibly steward taxpayer dollars,” she said. Trump’s executive order said peer reviews would be “advisory” only.

Grants to scientists at universities and other research centers make up about 80% of the NIH’s $48 billion budget, with the rest funding internal NIH research. Since 1946, the NIH has doled out funds based mainly on merits established by a scientific review process that ranks each proposal based on innovation, importance, and feasibility.

The peer review process, in which grant proposals scoring above a certain percentile generally receive funding, has always had its critics. Many a Nobel Prize speech has described failures by reviewers to recognize work that would end up leading to pathfinding discoveries, said Carrie Wolinetz, a former NIH chief of staff.

About half of the NIH’s 27 centers and institutes provide leeway to raise or drop grants on the priority list because of factors like institute-wide research goals, Fine said. But these exceptions apply to fewer than 5% of grants, according to Richard Nakamura, who led the NIH’s Center for Scientific Review from 2011 to 2018.

Nakamura’s successor, Noni Byrnes, retired last week after overseeing changes aimed at reducing one frequent target of peer review critics: the awarding of multiple grants to well-placed scientists from top-tier universities.

The Bhattacharya document “itself is not so disturbing in the light of usual practice,” said Harold Varmus, who led the NIH under President Bill Clinton and was the chief of the National Cancer Institute under Barack Obama. “What is disturbing is what it might mean in the context of the current administration.”

The expansion of the Trump administration’s political power at the NIH comes as it has strangled the release of thousands of grants with sometimes ambiguous policy statements and new layers of bureaucracy, including requirements that both the White House and the NIH director opportunities.

Career scientists, who have long run the NIH, have in some instances been replaced by political appointees playing critical roles in scientific decisions, staff scientists say.

New political appointees under Bhattacharya include chief of staff Seana Cranston, a former aide to conservative Rep. Thomas Massie (R-Ky.), and former Department of Government Efficiency manager James McElroy, Cranston’s deputy. The position of chief operations officer was created and filled by , a political appointee — since fired — who previously had been in charge of business development for a company that sold fitness programs.

Bhattacharya’s deputy, meanwhile, is Matthew Memoli, an infectious disease scientist who emerged as a sharp critic of covid-19 vaccine mandates. The Department of Health and Human Services stunned vaccine experts in May when it awarded Memoli and colleagues a $500 million grant to develop an influenza vaccine using older technology, with no explanation other than a superlative-filled news release.

The mood at the agency is morbid, said Sylvia Chou, a program officer at the National Cancer Institute. While a minority of workers speak out in protest through documents ,” others keep their heads down and their mouths shut.

Most grants must undergo new levels of review by senior NIH employees and the White House, program officers say. Staff members painstakingly police all grant applications for language — such as “diversity” or “climate change” — that might trigger scrutiny by higher-ups, according to four program officers, two of whom Ñî¹óåú´«Ã½Ò•îl Health News agreed not to name because they feared retaliation.

“Bhattacharya has been saying that program officers are making up ,” Norton said. “It’s true, we haven’t gotten a list from him saying, ‘Don’t use these words.’ But we do notice that when a grant says ‘health equity,’ it gets terminated.”

“We review them and screen them for all these words as we’re supposedly not doing — but we are doing,” said a program officer who has been at the NIH for six years. “After we approve them, they go to the grant management office and sit there. Then they send them back and say, ‘What about this word?’” This leads to self-censorship, the officer said.

The officer cited a recent proposal involving the effects of hotter weather on kidney disease. It contained the phrase “climate change” as background information, but “I had them remove it,” the officer said. “It’s a level of absurdity, but I wanted to avoid more delays.”

The peer review process itself is “starting to break down” because highly scored grants haven’t been funded for sometimes obscure reasons, Chou said.

The NIH picks hundreds of deeply experienced external scientists to serve on its review panels. While screened to avoid conflicts of interest, many reviewers are themselves NIH grant recipients. They accept pay of about $200 for 100 hours of work as a kind of social contract with the NIH, said Mollie Manier, a scientist at the Center for Scientific Review.

“We’re finding that people are more likely to decline to serve on review panels because their own grants are frozen, or out of protest at what’s happening at NIH,” Manier said.

Another review officer described approaching a Brown University scientist with a request to serve on a panel recently: “They said normally they would do it, but they’ve lost three grants and need to figure out how to keep their lab running.”

As grants crawl through the system, “reviewers are starting to feel they aren’t being convened for anything real,” Manier said. “If the government cancels your grant for no good reason, you can’t expect a good-faith effort anymore.”

“It’s death by a thousand paper cuts, anything they can do to gum up payments, to gum up the decision-making, to wrest control of grant decisions from the career scientists,” said Elizabeth Ginexi, an NIH program officer for 22 years who took early retirement in April.

Fine, the NIH spokesperson, said the agency had “no evidence that recruiting peer reviewers has become more difficult than in the past.”

The administration’s skepticism of peer review feeds doubts NIH scientists already had because of what they saw as irrational villainizing of mRNA vaccines and other matters — including Memoli’s vaccine award.

Although in-house NIH research isn’t subject to the same review process as external grants, Memoli’s grant left officials aghast. “I’m not aware of a process that awards $500 million for a project using antiquated technology to develop vaccines,” one seasoned reviewer said.

Trump’s executive order says the grant review process “undermines the interests of American taxpayers,” leaving many good proposals unfunded while supporting “too much unfocused research of marginal social utility.”

“The opposite is true,” the seasoned reviewer said. “We make sure taxpayer money goes to the most high-impact research.”

“Alignment” is a word the Trump administration frequently uses to explain why an official got fired or research was rejected. Chou finds it appalling.

“The Chinese Communists call it ‘harmonization,’” she said, and now her colleagues speak routinely about grants that are “clean” because they’ve “gone through alignment.”

“We’re saying this in plain English,” she said. “Not Russian, not Beijing Chinese.”

Ñî¹óåú´«Ã½Ò•îl Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

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